When?

Rowan is still dropping lower than we’d like in SATs.  He is breathing a little harder.  He is coughing.  He seems uncomfortable and like he feels bad.  His face is a little puffy.  And Doc and I are getting what smiles we can, but at the same time, wondering, “When is he going to get better?”  When?

If he’d had a virus, it should be better.  We haven’t gone anywhere, so we don’t know how he would have picked up any other ones.  His virus screens have all come back negative.

So – he is still needing oxygen and he is still dropping his saturations.

We feel like through out Rowan’s life this is what we’ve seen.

Day 1 – he crashes and they think his ductus is closing – echo shows that didn’t happen.  No true explanation.  They wait for his Norwood.

Norwood happens.  Rowan takes 2 months to get extubated.  Rowan develops tons of chest fluid, no one knows why.  It eventually goes away.

Rowan is extubated.  Rowan gets off oxygen.  Two weeks later he starts having trouble dropping.  He eventually is put on oxygen.

A cath reveals that he has pulmonary hypertension. 

It is treated.  He gets slightly better.

Rowan starts having serious withdrawal issues that put him in to shock.

Rowan gets off the oxygen for about a week and crashes.

Suspected virus, no confirmation.  Cath reveals slightly improved pressures.  Glenn is scheduled.

Rowan continues to SAT everywhere.  He is unstable, needs varying oxygen levels.  There isn’t a clear explanation for his problems.

Rowan has his Glenn and a hole in his heart is cleaned out that is thought to explain his volatility over the last few weeks.  Rowan gets off the oxygen for two days and then suddenly drops SATs into the 60s, requiring oxygen.

Rowan continues to drop lower and lower, even with oxygen.

So at this point. I am stopping to look at the entire story.  With so much that has been unexplained through out Rowan’s medical life, I feel like we are missing something.  I feel like there is a piece that we haven’t found yet.

So what has happened with him now doesn’t make sense to us.  We are going to ask for a few tests.  We are going to ask for some imaging as well as consider the possibility of doing another Cath on Rowan to see if there have been any changes in the last two months.  We know that the hole tried to close so maybe something else happened too.

If we look at all these things and we cannot find something that clearly explains these declines, then we will be asking for a conference with all of Rowan’s care team.  If Rowan is declining, but there is no solution to it, then I don’t want to ask Rowan to fight a ghost.

We are also now working on trying to get some assistance to help us cover a nurse in our home when Rowan is next able to come home.  We want to be able to be Rowan’s family more and his caregivers a little less.  I wish I could, but I have to admit that while I could handle Rowan’s care when it was temporary, looking at the long term, I cannot do all of the therapy, medications, oxygen regulation, and monitoring that it takes to care for Rowan 24/7. 

Evelyn is still really struggling with Rowan being gone and our time split between being with her and being with him.  Today we took her to see Rowan and she wanted to sit in “the cage” with Rowan.  I think she is actually scared.  We are trying to keep it together as much as we can around her, but I cannot protect her from this.  I can only model how to be strong but not lose you warmth and kindness in the process and hope that she learns to cope, as unfair as it is for a 2-year-old to have to.

We live with confidence that we have absolutely given Rowan the best we possibly can everyday.  We play.  We smile.  We live in a way that we do not regret.  He has taught us how to do that.  We trust the choices we have made and we will continue to make them - together.